The letter below addressed to Dr. Eugene Shapiro questions his comment published in the New York Times regarding Ross Douthat’s attempt to treat his case of chronic Lyme disease. We all know just how difficult this disease is as this petition alone has generated thousands of stories of medical neglect and incompetence.
The Deep Places: A Memoir of Illness and Discovery
By Ross Douthat
Letter to Eugene Shapiro:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: "eugene.shapiro@yale.edu" <eugene.shapiro@yale.edu>
Cc: "letters@nytimes.com" <letters@nytimes.com>, "gene@shraderlaw.com" <gene@shraderlaw.com>, "editorial@nytimes.com" <editorial@nytimes.com>, "corrections@nytimes.com" <corrections@nytimes.com>, "nytnews@nytimes.com" <nytnews@nytimes.com>, "editbd@nytimes.com" <editbd@nytimes.com>, "oped@nytimes.com" <oped@nytimes.com>, "tickbornedisease@hhs.gov" <tickbornedisease@hhs.gov>
Date: 12/01/2021 9:38 AM
Subject: Readers react to Ross Douthat’s account of his health travails and the exotic treatments he tried
The New York Times
OPINION LETTERS
Nov. 27, 2021
Seeking Cures for Chronic Illness
Readers react to Ross Douthat’s account of his health travails and the exotic treatments he tried.
https://www.nytimes.com/2021/11/27/opinion/letters/ross-douthat-lyme-chronic-illness.html
Eugene Shapiro’s comment:
"There is a reason there are controls in science experiments: In clinical trials 40 percent of patients with complaints similar to Mr. Douthat’s who received long-term IV antibiotics improved … but so did 36 percent of patients who received a saline placebo.
Dec 1, 2021
Yale New Haven Children's Hospital
1 Park Street
Ste West Pavilion - 2nd Floor
New Haven, CT 06504
Attn: Eugene Shapiro, MD
Dr. Shapiro,
I believe the study you are referencing where 40 percent of patients with complaints similar to Mr. Douthat’s improved on long-term antibiotics was the PLEASE study from Europe. [1]
I would like to point out that the PLEASE study along with the Klempner antibiotic trials [2] here in the US were cut short after only 90 days.
There are many known infections that require long-term antibiotic treatment beyond 90 days as identified in the chart below extracted from the following study:
Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
https://www.dovepress.com/benefit-of-intravenous-antibiotic-therapy-in-patients-referred-for-tre-peer-reviewed-fulltext-article-IJGM
[Note: Change.org does not have a way to embed pictures, charts etc. so please go to the link above to view chart# 3 on page 5. Nine infections are identified in that chart that take 6-36mo (or longer) to clear with antibiotics. Stopping the trial at 90days is highly suspicious of controlling the narrative and not advancing the science.]
I have two questions for you Dr. Shapiro:
1. What was the motivation on two continents for limiting clinical trials to 90 days in the long-term treatment of Lyme disease?
2. Does a chronic relapsing seronegative disease fit the vaccine model? [3]
Carl Tuttle
Hudson, NH
Cc: Editor, NY Times
Mr. Eugene R. Egdorf, Esq. Shrader & Associates
Tick-Borne Disease Working Group
References:
1. Randomized Trial of Longer-Term Therapy for Symptoms Attributed to Lyme Disease
https://www.nejm.org/doi/full/10.1056/nejmoa1505425
2. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease
https://pubmed.ncbi.nlm.nih.gov/11450676/
3. Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Abstract
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.